Living with alopecia

I am doing NaBloPoMo this month. 30 blog posts in 30 days. You can read more about it on San’s blog the in between is mine. #nablopomo2022

No hair, don’t care

The title of this post sounds more dramatic than it is for me. If you see pictures of me you will likely see me with a hat or a scarf on my head. If you would see me in real life you would realize pretty quick that I do not have hair.

I am even not sure anymore when it started but I must have been around 15 or so. It was not very dramatic at first. I did not suddenly loose huge amounts of hair but at some point there was no denying that I had spots that just did not grow hair anymore.

It took a couple of doctor’s visits before I received the diagnosis through the hair ambulance at the University hospital in Hamburg that I had indeed alopecia areata.

In a nutshell alopecia is an autoimmune disease where my own immune system attacks my hair follicles in some areas and there is no hair growth anymore. There is:

• alopecia areata where you have bald patches somewhere on your body
• alopecia totalis where you lose all hair on your scalp
• alopecia universalis where you lose all hair

If you have a parent with the disease you may inherit it or you may not. My dad has it, too but I am the only one of my siblings who does. In most cases the hair grows back, sometimes it does not. There are some medications that may help but they may not. When I was first diagnosed I tried a couple of things including a medication that required monthly trips to Hamburg for a blood check-up. I still remember those trips because it was on Fridays and I had to take the day off from school. I had the best time with my mom on those days going to the big city. Alas the medication did not help and the patches actually grew bigger over time.

I can’t remember exactly how I felt about it. I had good friends who did not mind, I had a boyfriend with 16 who loved me for who I was. When I lost my hair I did not care that much about fashion and I had time to ease into it. I was okay. Not okay to the extend that I embraced it or to not try to hide it with long hair and hats which became kind of my trade mark. When there was no way of hiding it anymore I did get a wig in my early 20s. It never felt quite right.

In my mid 20s I broke up with my boy friend of six years and started over. That was the point when I decided I would shave off whatever was still left of my real hair and leave off the wig. I kept thinking that I would not want to explain to a new love interest that “oh, by the way, this hair is not real and in fact I am bald”. I am happy to report that not one person reacted in a negative way – the opposite was the case. Hats became a daily part of my outfit. The styles changed a little over the years form berets to newsboy hats to scarfs. I feel a little naked without any. It’s not so much that I feel embarrassed without, it’s just something I am used to (and honestly some days it’s a little cold or a little to sunny).

I will come across people from every once in a while who think I have cancer. All of them are relieved to hear that it is “just” hair loss and nothing more serious. Even though I never quite understood why you would tell a stranger that you hope they will recover or that you pray for them if you don’t know at all what is going on in their life. I do not want to hear things like “Oh, there are so nice wigs these days. Why don’t you get one of those?” Inappropriate, my choice! And yes, I heard it before.

I sometimes feel wistful and a little relieved if my friends talk about their adventures in hair cuts. I believe hairloss can be very traumatic for some, especially if you feel that your hair is one of your best features. This is my story and I can’t speak for everyone. All I am saying is that you can be happy without hair, that there is beauty in that, too. I would wish for a world where appearance does not matter that much in general. Not because I am not feeling beautiful but because I think we all would be much happier if we would not feel judged for how we look like all the time.

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